By: Grace Huff
This November, in honor of National Family Caregivers Month, University of Florida researchers are spotlighting the importance of communication and the emotional side of dementia caregiving through a presentation at the Gerontological Society of America’s Annual Scientific Meeting.
Led by Carla L. Fisher, Ph.D., MSW, professor in the UF College of Medicine’s Department of Health Outcomes and Biomedical Informatics and member of the Fixel Institute, the presentation showcases the C3PM-Dementia model, an adaptation of a communication framework originally developed for spousal cancer caregivers to support their ability to achieve care goals and promote quality of life, both for caregivers and patients. This model helps spouses caring for loved ones with Alzheimer’s disease and related dementias communicate more effectively before, during and after medical appointments, promoting dignity, emotional support and overall connection.
“Patients’ and their family members’ communication needs are rarely prioritized in clinical care,” said Fisher. “How we communicate at home and in clinical settings influences how we cope, connect and even our physical health. We must care for our carers if we are to truly support patients.”
Working in collaboration with Melissa J. Armstrong, M.D., of the Norman Fixel Institute for Neurological Diseases, Fisher’s team confirmed that while dementia and cancer caregivers need the same communication skill support, spouses also identified four communication skills that are distinctly important in dementia care to achieve emotionally centered care goals. These include providing reminders of upcoming appointments, expressing emotional support, promoting patient engagement during appointments and engaging in relational rituals like sharing a meal or attending church after appointments. Collectively, these strategies help relieve the distress their spouse experiences with their clinical care. These strategies form the foundation of the adapted model, emphasizing that emotional care is as vital as medical care in dementia support.
“When caring for someone with medical challenges like dementia, spouses are responsible for most of the communication with doctors and other family members. This is one more stressor in an already stressful role,” said Armstrong. “The C3PM-Dementia model will hopefully take some of the burden off spouses by giving them practical guidance and skills for effectively talking to the medical team.”
Supported by the Florida Department of Health’s Ed & Ethel Moore Alzheimer’s Disease Research Grant Program, the project involved collaboration among UF researchers, trainees and community partners, including UF faculty Carma Bylund, PhD and Easton Wollney, PhD who also worked on the original model.
This highlights UF’s commitment to the education and training of scientists and trainees. Tyler Nesbit, Ph.D., is a former postdoctoral researcher on the study and now postdoc in UF’s College of Agricultural and Life Sciences and Emma Bryan, MA, is a former research coordinator on the project and current predoctoral clinical psychology trainee at the University of Miami. They led significant portions of the data collection and analysis while at UF. “I focused on patient-provider relationships and spirituality in maternal healthcare during my Ph.D., so the opportunity to work with Dr. Fisher on this project was very exciting,” said Nesbit. “I’ve experienced the toll dementia takes on families, so this work holds personal and professional meaning for me.” Bryan added, “I spoke with a woman caring for her husband with late-stage dementia while also grieving her mother’s death. When she said, ‘I just want someone to hug me,’ it captured the isolation caregivers feel, and reaffirmed my passion for supporting those who are often under-recognized in healthcare spaces.”
The Fixel Institute played an important role in bringing the research team together with local caregivers and community partners, a collaboration Fisher stated was essential to doing effective, translational research. “This research could not and should not be done without clinical and community partnerships,” said Fisher. “Our collaboration with Dr. Armstrong and the Fixel Institute bridged us with community leaders and programs, which further connected us with caregivers.”
Looking ahead, the research team plans to broaden the model to support adult children caring for parents and integrate it into a supportive care resource, Healthy Communication Practice–Dementia, designed to teach caregivers practical communication strategies for both clinical and home settings. As Fisher explains, “Caregivers deserve to be part of the healthcare system receiving their own care.”
As UF joins the nation in honoring millions of family caregivers this month, Fisher’s work underscores a powerful message: communication is care, not just for patients, but for those who love them.